The FOP Registry is the largest and most in-depth collection of FOP clinical and medical information and is independently operated by the IFOPA. The FOP Registry serves to help clinicians and researchers better understand FOP in order to accelerate the development and availability of disease-modifying therapies and is also a great resource for practitioners to publish and help elevate awareness about this rare disorder.

Participants’ contributions like yours help the Registry to fulfil our mission. Anyone living with FOP is eligible to participate by entering information every 6 months. Doctors can also participate in the Registry by entering in their patients’ clinical information.

The IFOPA believes there is power in numbers and the contributions of physicians and those living with FOP will provide a comprehensive insight into the disorder that will enable the community to further research efforts and opportunities to develop therapies.